05 October 2015

Eight ways to use Instagram to build a strong chronic illness community.

I recently wrote about my love for Instagram - sharing advice from Jadah Sellner and showcasing my favourite accounts. I mentioned how much I love using Instagram to connect with others who have Ichthyosis.

Instagram is an unlikely platform for forming a strong chronic illness community. I have 'met' lots of amazing people on Insta - even creating some great writing relationships (it's how I got to write the post for Jordy Lucas).

It's a great way to build a support network - so lovely to read comments when you're feeling down, and also to connect with others who understand what it's like to have a chronic illness or disability.

Danielle tells me:

"I use Instagram as part of my support system. It surprised me, but there is a great chronic illness community on Instagram. I've "met" some wonderfully encouraging people."

And Michelle, who has been doing awesome fashion posts to show she's gotten dressed despite being so sick, said:

"Mine's a bit of a mix of my life, but the reality is chronic illness tends to make an appearance in some manner as it's with me 24/7. In some ways mine is a tangible reminder to me that I am living a good life, especially on the days when it is all too much."

Here are eight ways to use Instagram to build a strong chronic illness community, plus more bloggers with chronic illnesses for you to follow.

Use Hashtags to find others in your community

I use hashtags to increase the searchability of my Instagram posts. (Hashtags are grouping tools - I wrote about them here.)

I always insert them in the comment below the post - I think too many hashtags clutter photo. I try to use relevant hashtags - occasionally using viral type ones (#quoteoftheday, #whatiwore #throwbackthursday).

Iconosquare has a great tool to see if the hashtags you're using are performing well, and suggests others you could use. (The Iconosquare optimisation tab (link above) also tells you which filters perform the best and when your audience is online)

I obviously use #Ichthyosis and this lets others with (or interested in) the condition find me. I regularly search this hashtag to find others affected too.

Recently I met a lovely lady from New York - also a blogger - who commented on my photo, saying she has Ichthyosis too.

We got chatting via email - it's been great! You can find her @AudreyAllure.

I've met lots of parents who post pics of their cute kids affected by the condition too.

Use illness hashtags on your photos and search for them on Instagram - see who you can connect with!

Reply to comments.

I'm not so great at replying to blog comments (sorry and thank you!) but I'm better at replying to Insta comments. I usually do this on public transport, replying to all new ones in one go. It's a great way to get a conversation happening and show you value your community. Last week I did a really silly post about what I was wearing (in my living room) to the AFL Brownlow medal, and I asked my followers what they were wearing. I posed in my pyjamas. The comments were great! Such a fun way to pass a Monday night.

When you build these relationships, it increases your credibility, and people will want to engage and get to know you. They might even visit your blog!

Do a photo challenge.

Ellyn, who blogs at I Need More Spoons, has dysautonomia. Her Instagram profile says the platform started out as a photo diary, but now she raises awareness of the condition.

October is Dysautonomia Awareness Month and she's created a photo a day challenge. So cool. She's asked others to take part, using #DysautonomiaPhotoChallenge. Each day has a different prompt.

If you start a photo challenge, you might want to collate the participants' photos into a collage at the end of the day/week/month and share it on Instagram, tagging the participants and thanking them. This will make them feel so special. (Use Diptic or Canva to create a collage.) Ellyn captured the faces from day one of her challenge in a collage.

You can link to your latest blog post in your profile by editing your profile each time you do a new post.

I can't say instagram creates a lot of traffic to my blog, but I do have the occasional follower who clicks out of Instagram to read my blog and returns to Instagram to leave a comment. Hi @Lenkaland!

Share a story.

I mentioned above that Instagram doesn't drive much traffic to my blog. That's ok - I've got my blog for long form posts. What it is good for is to share bite sized snippets of my life - food, fashion, flowers and sunsets, mostly. Because Ichthyosis is such a visual condition, and because I like to be in control of how my appearance and condition is portrayed, I like to share photos of myself and blurbs from my blog. People who don't follow my blog can get an insight into what life with Ichthyosis is like, and often, a lively discussion ensues. During Ichthyosis Awareness Month I shared a few posts about the intricacies of my condition - fingerprints, the need to wear a hat for warmth and a trip to the hospital. Followers seemed to find these posts interesting and informative.

The post fared well! Obviously there was written context. It is a proud thing for me because this treatment is a long time coming, and vein access is a skill. Most people are impressed, or welcome me to the "factor club" if they infuse too!"

"I think I probably use it mostly for escape, or release. I might see something that strikes a chord for some reason, it might emphasise the beauty that lies hidden all around us in very mundane things, or it might be a visual metaphor for how I'm feeling. I don't use Instagram a lot, and do use it for random things too, but that's the main thing. Probably. I travel a lot on trains, which can be hard when I'm not well, so I muse as a #reluctantcommuter... It keeps me company! :-)"

Take part in hashtag parties (or start one of your own).

Jadah Sellner called hashtag trends "hashtag parties". It's not literally a party, but it can be fun. It's joining a hashtag trend that someone else has created.

"After a mother of a child with albinism contacted Ross to see if he could offer any guidance for her young daughter, the model wanted to go beyond by helping others suffering from bullying and discrimination. And so he started a movement."

Of course, I loved this initiative and I jumped into this hashtag party, sharing my photo and a little story, and used relevant hashtags (below the photo).

My caption for the photo was:

I love the work of appearance activist and model @shaundross - he's started the movement #InMySkinIWin. Shaun says: "Beauty is you and what you make from your confidence in your own perfectly imperfect body. Together, if we encourage others to love what they see when they look at themselves, we can win in our skin." And here's me, winning in my skin. This picture was taken by Rick Guidotti from @positiveexposure last year - another appearance activist who captures the beauty in people with genetic medical conditions. When people tell me they wish there was a cure for Ichthyosis, or that I'm pretty, despite, or that they couldn't handle looking like me, I realise my strength. I shrug off the way the media portrays perfection. We win in our skin when we are comfortable enough to reject those standard beauty norms and celebrate our differences. We win in our skin when we tell people we are happy with our appearances and don't need to be fixed. ❤️

I guess I've started my own hashtag trend - #appearancediversity - I don't see many others using it though! Get on board :)

There are lots more photo challenges you can join in on - and they don't have to relate to your illness - but can raise awareness of it all the same. I love doing #EveryDayStyle - I wrote about my reasons here.

I really like the #hospitalchic hashtag party - showing off style in hospital.

Do a fundraiser for your illness community.

Camille from CurlyPops is the queen of Instagram fundraising - raising funds for The Heart and Lung Transplant Trust of Victoria and raising awareness of organ donation.

She always links to her fundraisers in her profile (see above tip!) and she shares fundraising tallies and photos of the events - showing great transparency. She also shows the importance of blood donation by taking photos of intragram infusions at hospital. Find her @curlypops.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.